One aspect of being a Parky that adds to the challenge of dealing with the disease is that there is a considerable amount of self-management. As much as I would like to just get up and GO, I cannot. Instead I have to carefully consider the environment I’ll be in and plan accordingly. Questions like, will I need to do a lot of walking? If so, I definitely need to plan in extra time. Also, regardless of where I am or what I am doing, I stick to a strict schedule regarding my medication. I have to eat regularly as well or my Parky fatigue is far worse. I think any Parky would tell you, there’s no fatigue like Parky fatigue. If it strikes, generally the only thing you can do is lay down until it goes away. So, it’s always a good idea to try to make sure there’s a way to get away to somewhere I can rest if I need to. To help illustrate the importance of paying attention to my Parky symptoms, I describe below how a recent outing with the family almost ended in disaster.
A few weeks ago, I went on a long bike ride with my wife and two sons. Riding bikes is one of my favorite activities to do with my family…and it was an epic ride. After about 15 miles and a couple of hours of riding, we got on a tricky mountain bike trail at a park called Laurel Hill. Normally I’m a pretty good mountain biker and would have no trouble with this trail. HOWEVER, sometimes if I engage in physical activity for hours on end, I need a little extra medication to keep my Parky symptoms at bay. But unfortunately, I failed to notice that my reflexes had slowed to a crawl…until I started to navigate a turn and…. just awkwardly flopped over.
I now recall vividly the situation as it occurred. The captain (my brain), processed environmental feedback (attitude, trajectory, speed) and predicted a flight path based on the observed terrain. As the captain eased the controls to shift the crafts (my bodies) weight to compensate for the dip in the terrain he became alarmed when…. nothing happened. Concerned he issued the command again, the body was responding, but too slowly. As the captain kept reading sensory input and commanding the vessel accordingly the craft was simply not responding to the commands quickly enough to compensate for the now rapidly changing conditions. It became clear to the now panicked captain that the badly listing body was on a certain collision course with the ground. The captain sounded the alarm, BRACE FOR IMPACT! As a last-ditch effort to protect the command module (head) he issued the command to raise the shields (arms). Unfortunately, this command too was largely ineffective and the craft simply crashed into…a soft patch of dirt.
As weird as it may sound, I really did casually watch this entire situation unfold as if an outside observer. I essentially watched by brain frantically yet ultimately un-successfully try to control my Parky body. My shocked 11-year-old son Owen, who had just watched me easily navigate for more difficult terrain rushed to see if I was ok. Me, now being accustomed to crazy shit like this happening, knew exactly what had just happened. After some effort, I extracted myself from the crash site and explained to my son that Parkinson’s sometimes makes my reflexes very slow and I need to be watchful for this so I can manage the symptom appropriately. He asked me if there are other factors besides fitness that determine the severity of a Parky’s symptoms. Owen considers his Dad to be very fit, and was surprised that my body control could be so badly affected by Parkinson’s. I explained that while being fit does make the symptoms far more manageable, it does not make me immune from experiencing the symptoms and that yes there are other factors that determine the severity of the symptoms.
So, I was lucky. Instead of taking a trip to the emergency room, I took a little extra medication and we finished out our adventure. This fun family outing turned into a learning experience for my family and a reminder for me to keep a watchful eye on the ship!